“We may have the same neuromuscular condition as it’s described in medical journals, but the way that SMA affects us varies significantly from person to person.” This is true on so many levels! While we all live with the same condition and can relate to each other in ways that others just can’t, our individual stories and experiences are all com…[Read more]
I love this one! Angela has been a good friend and role model to me for many years. I have always admired her approach to working with her students. When I was a kid I wanted to be a teacher and Angela is a big part of why. As I’ve grown up, I’ve realized I’m not cut out to be a teacher, but I still love hearing about her experiences and the relat…[Read more]
I had to request time off recently because my body demanded it. About two weeks ago I got very sick at the exact same time I had planned to write a column. I was hoping to write it anyway but my body gave me no choice but to sleep. As much as I didn’t like it, my body’s needs had to come first, and I’m grateful to work for a company that understands that!
I just finished a really interesting book called Kingdom by Jess Rothenberg. It’s about a “cyborg” named Ana who is a princess in the world’s best theme park which aims to make everyone’s dreams come true via virtual reality and technology. When she starts to go against her programming, Ana is accused of murdering a staff member that she claims to…[Read more]
I’m sure being a parent is never easy, but SMA has a knack for making everything even more challenging! I really admire you for working to change the way people view disabled mothers and for doing such a wonderful job raising your beautiful daughter!
I wish I could fully convey how inconsiderate the people in the aquarium were! It was unbelievable and exhausting! But it was great to see that even when these things happen, there are still people in the world who care about others!
For me, I think one of the trickiest parts of getting a tattoo is actually the healing process. I had to make sure my arm wasn’t rubbing against things when I was moved and be careful that my vest wasn’t bouncing against it. I also like really hot showers and it was tricky to keep my arm out of the way.
Think it’s great that you want to help Crystal! Even if he has been approved now, you could still reach out to the family. Sometimes being a role model for families with young children with SMA is one of the biggest things you can do! And honestly, everyone needs to know that there are people thinking about them!
I think one of the best ways to manage stress is having one or two really close friends that you can talk about and through things with. I’m honestly very close to my mom and I also have one friend in particular that I share a lot with. They are both people that I trust and that I know I can talk to in confidence. I’ve also started journaling lat…[Read more]
I have definitely had a few people run over their own feet with my chair while trying to hug me! Some people no how to safely hug me from either side, but most of the time I try to direct people to my right side. Anytime someone hugs me from the left without much warning I just try my best to block the joystick with my arm. Occasionally I can turn…[Read more]
Ryan I love your new one! Your artist is very talented! I have one. A butterfly with the SMA ribbon in the center. I’ve been considering getting another. The hard part is deciding what. My artist is really good at putting his own twist on whatever design he’s given which is great because I don’t really want to copy anything that has already been done.
DeAnn, if you ever need a recipe let me know! My favorite to make (and eat) is creamy ranch chicken with angel hair! Ryan, I totally agree with that! The crockpot is usually the only way to make tougher meats like pork tender enough for me to eat.
Kindles are a great option, but if you decide to check out iPads, you could a used one online for a similar price to kindles. It might not have all of the features, but if you’re only using for reading it should be fine.
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